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Tuesday, October 29, 2013

of all the things people can say they do not like about facebookone thing they cannot refute is the outpouring of support you can receive in a short period of time with a reach that surpasses that of any other mediumyesterday i was overwhelmed by the show of care by so many of youby the press of that infamous ‘like’ buttonand particularly your heartfelt comments of love and concern

as i promisedi will talk in more detail about the results from mike’s appointment with his new doctorthis multiple sclerosis specialist with his own multiple sclerosis clinicas you can imagine there are so many details to the results and how they all interconnect and effect our decision to continue down the road with a new medicationi will attempt to explain the most important parts to the best of my ability and understanding

as i explained to my facebook friends yesterday

to summarize our appointment there was some good news

and some not-so-great news

but the good news about the not-so-great news is that there is a plan moving forward to overcome some of it and to monitor the really scary parts

one of the most comforting elements of our visit was my continued feeling of peace about the direction we are headed

and a confidence in this doctor and his staff and the plan in place

so here’s where the details will come

a lot of technical info so hold tight if this is what you came here to read

if not you can skim or skip to the bottom

so some of the good news

is that despite mike’s blurred double vision and tracking difficulties

his eyes are healthy and the myelin sheath around his optical nerve is still thick

with his vision actually at 20/15

which mike proudly declares is actually a step down from his previous stellar 20/10

after much research and listening to the input of countless concerned individuals as i’m sure you can imagine

we have chosen a path with a medication that the doctor and we all feel will be the best hope for mike due to the aggressiveness of his disease and symptoms

it is called tysabri

as i type this i realize that by stating this that some of you familiar with this drug may be concerned and feel the desire to warn us of the dangers of its use

we have been made full aware and are continuing to proceed due to this peace and confidence we have felt

allow me to explain to the others

with this medication your chances increase of getting a rare brain infection that causes death or severe disability

it is called progressive multifocal leukoencephalopathy (PML)

there are a lot of details regarding this infection but as it applies to mike

before you can take tysabri you are tested for the john cunningham virus (JCV) which exposure to increases your chance of getting PML if you have a weakened immune system, which would include those taking tysabri

this test puts you on a scale of negative and positive and then puts you somewhere along that scale to indicate the risk level of you developing that infection

the scary part comes that mike was placed on the scale on the positive side

at a level they would expect to see after a year of already being on the medicationand with mike's history of horrific reactions to medicationsthis definitely got our attention

so why would we continue to pursue this medication?

here’s where the peace and confidence come in

as i am sure you guessed we have been praying for years about what path we should take regarding mike’s health

we have felt peace with each decision we have made

although some of the peace has taken longer for me to feel than mike

i am so grateful that we have made these decisions together and with our Heavenly Father so that no matter the outcome we know that we did what was best

he did so with confidence in his ability to closely monitor and reevaluate mike along his journey

he gave us a scheduled plan out 186 months and what tests he would receive at each treatment

he too was very hopeful in the possible benefits this medication could have for mike

of course not making any promises

and making us aware of those who have not received benefits

but also pointing us to a large percentage of his patients who have

so although the risk and fear is there

the peace and confidence outweigh them

we now wait for pre-authorization from our insurance for these treatments

and look into financial aid for this costly medication

we have been reassured that there is help available

it is our hope that these monthly infusions will begin within the next two weeks before i leave for my next Nerium Bash in Long Beach in mid November

the medication will take four months before it can begin to take effect

at which point we hope the relief and progress will come quickly

this was a long one

and i am humbled that so many of you care enough to read it all

so many of you tell me that you pray for us on a daily basis

and i want you to know that i feel it

i have recently thought that i would like to create a ‘faces of support’ board in which i print out photos of you all and put them up in a place i can see you smiling down upon me during those times of loneliness and discouragement

know that i close my eyes often and see your faces in my mind

i feel of your outreach of love

i feel of your thoughts and prayers

and it makes the world of difference in my life

and the life of my family

oh how i have been blessed by a community of friends and family who constantly lift me and plead out to my Savior on our behalf

upon the conclusion of my trip i sat on my return flight and experienced take off as i never had before

the process impressed greatly upon my heart

a perspective change was made

as we lifted up with ease through those looming clouds

those clouds which had seemed unrelenting and menacing

we passed through them

after some extended moments of obstructed sight

to reveal a gorgeous blue sky and beaming sun

the sunshine illuminating the tops of the clouds and their rolling beauty

i leaned against the window, closed my eyes, and soaked up the warmth of the light for a really long time

i sat mesmerized by an event that i had experienced probably a hundred times since my first flight alone as a child of ten years old

i saw this through new eyes

the eyes of this girl needing a perspective change

to remember what is just above the clouds

blue skies and sunshine

and to get there you must rise above them

there have been moments lately when all i have seen are the clouds and felt the beating of the relentless rain
those circumstances in my life that i have let consume me and weigh me down
those circumstances i have let build borders around me and limit my view
skew my true reality
that blue skies and sunshine are there
they are just beyond the clouds
and when i am lifted high enough to pass through them
i can see the bright blue
i can feel the warmth
i can experience their revitalization to the soul
i can bask in their beauty and light
and i will remember the journey and where i rose from

when you were able to rise above your clouds? what or who helped you rise?

Thursday, October 17, 2013

another step in our journey
one rather large leap rather
that space between each of our stepping stones seemed to just spread further apart
for each step ahead may require a running start
but as we leap from stone to stone
we will head further downstream more quickly

yesterday the efforts of our whirlwind move were meshed into one event
meeting with a new doctor
not just a new doctor, but a Multiple Sclerosis specialist
one who has a clinic of two thousand patients
two thousand sufferers of MS

seven weeks ago when we decided that we would move
{has it really been that long}
we made an appointment two months out to see this doctor
a doctor who had been heavily recommended by varying sources
as the days have marched on
with Mike's episodes of confusion, anxiety, and oppression of thought
increasing and intensifying
that day seemed torturously far away
feeling helpless in what i could do to hasten it
i called every day to the doctor's office inquiring after a cancelation
i explained our situation and told the office staff that they would be hearing from me tomorrow and tomorrow and tomorrow
i hoped that they would understand, knowing that if it was their husband they would do the same

victoriously a sooner appointment appeared
and yesterday we headed out to this most highly anticipated event
a day we had looked forward to with hope but also a tinge of fear
great hope for the possibility of relief as well as some regain of Mike's abilities
great hope for the quality of life to improve, for us all
great hope for the cloud of cognitive disruption to be lifted
but with a small fear of what pumping new medication into his system may produce after the near deathly effects of the past medication
but we are at the head of a new path
this path with new terrain ahead
we are choosing not to question why our past had to take the twists and turns that it did
why we were led down certain rather treacherous trails
i am fighting that natural tendency to ask why
this fear of what happened in the past could not be allowed to overshadow our hope
for it is a hope burning brightly

and hope we did receive
peace and hope
our appointment took a significant portion of the day
to which i was grateful
we were able to meet with the physician's assistant whose manner was sincere and attentive
she reviewed all of Mike's past medical history and his current symptoms
she analyzed his walk, his speech, his reflexes, his strength
she answered our questions and did a marvelous job of explaining aspects of MS that were still unclear to me
she cared
she then went and consulted with the doctor and they returned together as a team
i was pleasantly surprised at the attention and enthusiasm the doctor portrayed in his words to us
he is passionate about his field and feels tremendous excitement as to the research and progress that is being made in treating MS
he laid out our choices as he saw them and identified himself as a consultant to us, knowing that we had the final say in what we choose to do with his recommendations

something that was reiterated to me through the tone both the physician's assistant and the doctor used on separate occasions to explain what they saw on Mike's scans
was that his condition is serious
he has innumerable lesions
as you can imagine we have spoke with many who know someone with MS
and we have found that many of them know how many lesions they have
they can count them
Mike's are innumerable
too many to count, the radiologist specifically defined
with lesions not only on his brain but on his spinal cord
that small real estate where all the nerve signals must travel through
inflammation there caused by MS makes the passing of signals quite difficult
the path of medicine that the doctor recommended would reduce that inflammation and would hopefully allow some of the symptoms to be reduced
the medicine will be aggressive

but throughout the entire appointment both mike and i felt that this was where we were to begin
it may have not been right before to pursue this path
but for whatever reason now is the time

there are some initial testing that must be done
and that is the next step for mike
we are hopeful
and feel your hope for us as well
thank you for your continued prayers
for your continued concern and questions
thank you for taking this ride with us
we are anxious to see what lies ahead
as i know you are too

Thursday, October 03, 2013

hello friends
sending you all some crisp air and brightly painted leaves from this part of the world that experiences a true fallfriends its no secret that i rely on youyou my Sweet Dreams familyi recently reread the post that changed my life foreverthe very first post in which i allowed myself to be vulnerable and share what Mike and I were truly experiencinghis long awaited diagnosisthis openness brought to my life one of the greatest blessings i could never have imaginedyouall of youthrough your comments both on and off of this blogi know that you carei know that you are thinking about us
carrying our life and the weight of it upon your own shoulders
wrestling with the whys and hows
praying for us
some of you on a daily basis
you will never be able to comprehend how tangible all of that feels to me
i feel of your positive energy
i feel of your confidence in me
i feel of your prayers on our family's behalf

today i must ask for you help once again
its time for something else tangible

as you know, this past month wepacked up our family in one week and moved up here to the mountains of Utah to be closer to what we pray is more suited healthcare for my husband Mike who has recently experienced a drastic decline with his Multiple Sclerosiswe are venturing on a new journey with me working to become the main provider for our family of sixsomething that must happenand willfor i have been miraculously blessed to partner myself up with a ground breaking anti-aging company in the relationship marketing industry Nerium Internationala company recently featured on the View and the Emmy'si am launching my business here in Utah and would love your help in reaching out to as many people as possibleour phenomenal products and money making opportunity may not be for you,but i would ask you to keep me in mind as you are talking with your friends and family who may be wanting to look ten years younger or make some real extra moneyto celebrate the launch of my business here i am hosting two parties at my home in Draperif you are here in Utahi would love to see you and catch up!!the parties will be TODAY Thursday the 3rd at 7:00 pmNEXT Wednesday the 9th at 7:00 pm

then email me at mikeandbriana6 at gmail dot com if you would like to try a 30 day sample with a 30 day money back guarantee
or receive more information on how you can get start your own business with Nerium